A minute ago I had a revelatory moment that sparked an audible “Oh, shit!” I’m not new to having revelations about my own life, although I should be. A person’s own life should never be a surprise. I mean, the meat of it, the day to day routine, the knowing your abilities - the knowing the truth of yourself. You should know where you came from and where you’re at now. It’s a good metric.
The last time I had a moment like this was in a developmental psychology course. It was one of those elementary exercises where the professor makes a statement and you raise your hand if you agree. So, she describes a situation with a kid and we raise our hand if we think it’s abuse. We raise our hand if we should report it to the department of social services. I didn’t get a single one right, and worse yet, I’m feeling smug because I lived through most of them. In my head, I was saying “well, no one reported that or that when I was young.” Around the third round of leaving my hands on the table top and watching everyone else’s hands jump to the sky I realized I was abused and neglected. “Oh, shit,” nineteen and suddenly realizing I lied every time a doctor asked me if I had a trauma history. The frequency of that question should have clued me in, but hindsight and all and then there’s blurry vision and whatnot.
Here I am years and years later having another uncomfortable moment. Less interesting, but it is causing a similar shift.
I just joined a new social media. In my attempts to feel less alone I typed “spoonie” into the search box. Up comes more than a few posts. A lot of multiple sclerosis, a lot of myalgic encephalitis, one person with anemia. There were no posts about chronic fatigue syndrome, which is the label I was given at 23 years old. I probably would have fit the criteria for it a decade earlier than that.
There was one post that jumped out at me. It was a woman who was flaring while her husband was away on a work trip. She was calling on all spoonies to give her ideas for meals when she’s tired. My eager hand shot to the sky, so confident that I had some meal ideas: lettuce and smoked salmon, box of organic soup, apple with peanut butter. As I scroll down to add my reply I read through a dozen replies from other spoonies. They are not easy: sauté onions and add a can of beans, make rice then stir fry with veggies and chicken, take a piece of fish marinate it and bake. Make MAC AND CHEESE. Jesus, I’m even tired thinking about making macaroni and cheese. Waiting for the water to boil. Stirring and stirring and stirring the pasta. Draining it theougha colander. Cleaning the colander. Heating the milk and butter. Beating the lumps out of it. Mixing it all together. And I haven’t even tolerated cheese since I was like 18! Oh, and then there was this one: “if you’re too tired just cook an omelette.” Seriously, I can’t even make it to the whole “adding pasta to boiling water” and that’s only step 2 out of a 6 step macaroni and cheese. I can’t stand for that long. I get tired. I get weak. My brain fog worsens and I forget which step I’m on. I dissociate and get lost inside my head. I always have to sit down before a meal is made.
I am so much worse than I thought I was. This - whatever etiology is behind this trash can diagnosis - it’s killing me. I’m not hacking it. I’m not living or even surviving. No amount of positive thinking could have prevented me from this revelation: I am 34 and I am sick.
I’m not chronically tired. I am ill. There is something wrong and I want to fix it.
I am starting this blog because I vow to get better. I vow to be happy and healthy. I vow to live. I am holding myself to it and this will chronicle my way there.
The last time I had a moment like this was in a developmental psychology course. It was one of those elementary exercises where the professor makes a statement and you raise your hand if you agree. So, she describes a situation with a kid and we raise our hand if we think it’s abuse. We raise our hand if we should report it to the department of social services. I didn’t get a single one right, and worse yet, I’m feeling smug because I lived through most of them. In my head, I was saying “well, no one reported that or that when I was young.” Around the third round of leaving my hands on the table top and watching everyone else’s hands jump to the sky I realized I was abused and neglected. “Oh, shit,” nineteen and suddenly realizing I lied every time a doctor asked me if I had a trauma history. The frequency of that question should have clued me in, but hindsight and all and then there’s blurry vision and whatnot.
Here I am years and years later having another uncomfortable moment. Less interesting, but it is causing a similar shift.
I just joined a new social media. In my attempts to feel less alone I typed “spoonie” into the search box. Up comes more than a few posts. A lot of multiple sclerosis, a lot of myalgic encephalitis, one person with anemia. There were no posts about chronic fatigue syndrome, which is the label I was given at 23 years old. I probably would have fit the criteria for it a decade earlier than that.
There was one post that jumped out at me. It was a woman who was flaring while her husband was away on a work trip. She was calling on all spoonies to give her ideas for meals when she’s tired. My eager hand shot to the sky, so confident that I had some meal ideas: lettuce and smoked salmon, box of organic soup, apple with peanut butter. As I scroll down to add my reply I read through a dozen replies from other spoonies. They are not easy: sauté onions and add a can of beans, make rice then stir fry with veggies and chicken, take a piece of fish marinate it and bake. Make MAC AND CHEESE. Jesus, I’m even tired thinking about making macaroni and cheese. Waiting for the water to boil. Stirring and stirring and stirring the pasta. Draining it theougha colander. Cleaning the colander. Heating the milk and butter. Beating the lumps out of it. Mixing it all together. And I haven’t even tolerated cheese since I was like 18! Oh, and then there was this one: “if you’re too tired just cook an omelette.” Seriously, I can’t even make it to the whole “adding pasta to boiling water” and that’s only step 2 out of a 6 step macaroni and cheese. I can’t stand for that long. I get tired. I get weak. My brain fog worsens and I forget which step I’m on. I dissociate and get lost inside my head. I always have to sit down before a meal is made.
I am so much worse than I thought I was. This - whatever etiology is behind this trash can diagnosis - it’s killing me. I’m not hacking it. I’m not living or even surviving. No amount of positive thinking could have prevented me from this revelation: I am 34 and I am sick.
I’m not chronically tired. I am ill. There is something wrong and I want to fix it.
I am starting this blog because I vow to get better. I vow to be happy and healthy. I vow to live. I am holding myself to it and this will chronicle my way there.